Brain disease claims divide hockey doctors and Boston University researchers

On Friday, while his 9-year-old son was playing hockey at a tournament in Massachusetts, Brendan Shanahan(notes) drove to a suburban Boston hotel for a meeting. The man in charge of player safety for the National Hockey League sat down in a boardroom with Robert Cantu, Ann McKee, Chris Nowinski and Robert Stern, co-directors of the Boston University Center for the Study of Traumatic Encephalopathy.

They showed him pictures on a laptop computer. Technically speaking, they showed him abnormal tau protein they found in the brains of deceased athletes – evidence, they say, of a progressive degenerative disease that is triggered by repetitive head trauma, that can begin months or years after the end of athletic involvement, that is associated with cognitive and behavioral problems.

Simply put, they showed him ugly build-up of black stuff in brains.

"It's obviously disturbing to look at," Shanahan said.

Shanahan came even though doctors advising the NHL and NHL Players' Association have visited BU themselves, reviewed the research and raised concerns, saying some claims have been simplistic, sensational and unsupported by science.

In short, they say no one has proven what causes chronic traumatic encephalopathy, what effect CTE has or what the level of risk is. They say no one can draw a straight line from head trauma to CTE to mental problems. While they laud BU's role in raising awareness of head injuries, they worry fear blown out of proportion has consequences – keeping kids from playing contact sports, even potentially contributing to suicides.

Although Shanahan is not a doctor or scientist, he is a hockey dad. He is the NHL's new disciplinarian. He has a new title (vice-president of player safety and hockey operations) and leads a new group (the department of player safety) created by commissioner Gary Bettman. It is his job to enforce new rules and educate players via video in an effort to reduce head shots and concussions.

[Related: What is chronic traumatic encephalopathy (CTE)?]

He is also a former power forward, a 21-year NHL veteran who fought and hit, who suffered concussions and served suspensions himself. Finally, he is a son who was 15 when his father, Donal, developed Alzheimer's. He is a son who was still just starting his NHL career when his father died of the disease in 1990.

Friday was not the first time Shanahan had seen a degenerated brain. When he played for the St. Louis Blues in the ’90s, he did charity work for St. Louis University and Alzheimer's disease. He took a tour of a brain bank to learn more about it. After he won his first championship with the Detroit Red Wings in 1997, he took the Stanley Cup to his father's grave in Toronto and sat there alone on a Saturday afternoon.

"I lived the experience of watching somebody's brain not work the way that a brain should work," Shanahan said, "and I know that devastation personally."

Shanahan said he ignored criticisms – both of BU's claims and of the NHL's response – and came to ask questions Friday. He wanted to know the differences between CTE, Alzheimer's and other diseases. He wanted to know what researchers think causes CTE.

"I know when these doctors speak in scientific terms, it may be very early," Shanahan said. "But I still think it's great work on their part. I'm happy that someone has committed themselves to doing this type of research."

But Shanahan told them that, at least on a practical level, they were preaching to the choir.

"I didn't need any convincing that repeated blows to the head are bad for you," Shanahan said with a laugh. "I don't feel like I need my shoulders turned. My department's goal is to keep hockey physical but at the same time make it as safe as possible and eliminate dangerous, illegal head shots."

Head trauma has become a hot topic in sports, partly because of BU's work since its research center was founded in 2008, but also because of the increased knowledge of concussions over the years. The NHL has been proactive on the concussion issue independent of the CTE research.

The NHL instituted baseline testing and return-to-play protocol in 1997 and outlawed blindside hits to the head in 2009 – both ahead of similar initiatives by the NFL. But at a Hockey Canada concussion seminar last November in Montreal, one expert called the BU research "very preliminary."

"I think the way we interpret that science or those results is to say, 'There's a great concern here,' " said Mark Aubry, the chief medical officer of the International Ice Hockey Federation, a team physician for the Ottawa Senators and a member of the NHL's concussion working group. "If concussions [are] going to lead to earlier dementia, depression and all the rest of it, then we need to work even harder. But those are isolated cases. They don't make for a true scientific study."

At the time, BU had diagnosed CTE in only one former NHL player: Reggie Fleming, who died with dementia in 2009 at age 73.

Then BU announced in March that it had diagnosed CTE in Bob Probert, who died from heart disease in 2010 at age 45. Both Fleming and Probert were fighters.

The NHL strengthened its return-to-play protocol in March. It outlawed all hits that target the head – not just those from the blindside – and broadened its boarding rule after the season.

Meanwhile, the NHL also suffered the deaths of three enforcers in a matter of months during the offseason – Derek Boogaard(notes), Rick Rypien(notes) and Wade Belak(notes) – sparking a discussion about whether fighting played a role. Boogaard's brain was donated to BU; the results are pending.

Finally, the day before the puck dropped on the 2011-12 season, BU released the news that it had diagnosed CTE in the brain of Rick Martin, who died of a heart attack in March at age 59. He was not a fighter.

Cantu and Nowinski made statements afterward that particularly irked hockey experts and executives.

HBO's "Real Sports" produced a segment on enforcers. Cantu was asked if he thinks the NHL will have more deaths if enforcers continue to have hundreds of fights over their careers. He told HBO: "Yes. I do. I do. We'll have more deaths in that enforcer group, unquestionably."

Boogaard, Rypien and Belak all suffered from depression. But that has not been linked definitively to fighting, and the circumstances of their deaths were different. Boogaard mixed alcohol and painkillers. Rypien reportedly committed suicide. It is uncertain how Belak died – some reports saying he committed suicide; some friends insisting he was involved in an accident.

The NHL and NHLPA pledged to investigate the enforcers' deaths, but they are "still looking at lots of different factors," said Ruben Echemendia, the NHL's neuropsychological consultant. "I think absolute statements in the absence of cause-and-effect data are problematic."

CBC's "The National" produced a piece on BU's research in light of the Martin diagnosis. Cantu told CBC that because Martin wasn't a fighter and had only one documented concussion, "we've got to be concerned that the jostling of the brain just from the skills of the sport of playing in the National Hockey League led him to having chronic traumatic encephalopathy when he died."

"They keep going to the cause-and-effect relationship which hasn't been supported at this point in time," Echemendia said. "It may be in the future, but at this point, it's not. We don't know what causes CTE. Nobody knows what causes CTE at this point in time."

BU described Martin's case as mild – the second of four stages. He had no clinical symptoms. McKee told CBC that it suggested to her that Martin was "one of those individuals that just was resilient to the disorder, was less susceptible maybe to the severity … less likely to develop the severe disease that some of the other athletes have developed." Reminded Martin wasn't a fighter, she told CBC: "Right. I think that's very important."

"We don't know who is susceptible to this," Echemendia said. "We don't know who is not susceptible to this, and we don't know the combination of factors that then lead to CTE at this point in time. My hope is that we will in the near future, but at this point in time, we don't have that information."

Nowinski also told CBC that had Martin lived longer, "it would have progressed. And who knows how quickly, and who knows how badly? But he would have eventually developed dementia if he lived long enough, no question."

"There's no data to support that," Echemendia said. Nowinski said he was trying to make the point that there could have been severe consequences in the future that no one could control.

"And I had this exchange with a senior hockey person who said, 'What's the big deal about Stage 2?' " Nowinski said. "I couldn't believe it. I'm like, 'Because it becomes Stage 3! That's why [it's a big deal]. It started at Stage 1, and then it became Stage 2. Therefore, there's a chance it becomes Stage 3.' And if people can't get that, then they'll never take this as seriously as it deserves."

Nowinski declined to name the person. But Toronto Maple Leafs general manager Brian Burke identified himself as that person, and he recalled the conversation differently. Burke said he told Nowinski, a former Harvard football player and pro wrestler who retired because of concussions, that Nowinski probably had what Martin had. Burke said he didn't know enough to get into the specific stages of CTE but that none of this is really news.

"I wasn't making light of this at all, and I resent bitterly that he has cast this in this way," said Burke, who played football as well as hockey growing up and suffered at least four concussions. "I'm all in favor of making sure all athletes know all the risks of the sports they played. But I played contact sports because I wanted contact. I wasn't a swimmer or a golfer or a tennis player. I picked contact sports knowing there was a risk associated with that."

[Related: Leafs GM Brian Burke skeptical of concussion research]

Nowinski allowed that some criticism is valid, while fiercely defending BU's research, expertise and mission.

Asked about Cantu saying more enforcers would die, Nowinski said: "Nobody can say unquestionably. But I think if you were a betting man in Vegas, you know … I think from his perspective, he is certain. … We're certainly not trying to say that every enforcer is going to go off and kill themselves, but we do want to say it's important that we pay attention."

As for Nowinski's comment about Martin eventually developing dementia, Nowinski said: "It's a fair criticism. The statement I would make now would be, 'Based on what we know, it would probably progress.' I guess you can never be certain in these situations, but the idea is, you have a degenerative disease at a relatively young age that leads to dementia. It could have been when he was 69. It could have been when he was 169. … Which is where the 'If you live long enough' concept comes in."

Overall, Nowinski said: "There is a needed role for medical professionals in this field to be evidence-driven, to be conservative in their statements and to call people to the table when they go too far. I'm open to the criticism, and some of it has been very positive in terms of helping us get our messaging right. But there's also a role for telling people the truth – or what we are pretty confident is [the truth]."

So what is the truth? What do we know, or what does everyone agree on? What don't we know, or where do doctors disagree?

Echemendia visited BU last September. Jeffrey Kutcher, a consultant for the NHLPA, visited BU last month. Kutcher is the chair of the Sports Neurology Section of the American Academy of Neurology and an associate professor at the University of Michigan, where Mark Fehr, the son of NHLPA executive director Don Fehr, recently did his fellowship in epilepsy, a sub-specialty of neurology.

Both Echemendia and Kutcher agree CTE is real. Kutcher said that though it has not been proven experimentally, there is reasonable anecdotal evidence that repetitive head trauma causes abnormal tau deposition – the build-up of black stuff in the brain.

Nowinski agrees that the risk factor among the general population and rate of progression of the disease has not been established. He agrees BU's research is limited – a series of studies of particular cases. BU has 96 specimens. McKee has completed the analysis of the brains of more than 70 former athletes. More than 50 have shown signs of CTE, including 14 of 15 former NFL players and three out of three former NHLers.

"We've never claimed to have a denominator," Nowinski said. "We've never claimed to be doing incidence-of-prevalence studies. We've claimed we have a biased sample when we report numbers. We are on the record everywhere saying our sample is biased. … We are well aware that families are more likely to donate if they thought they noticed symptoms that could be attributable to CTE. However, we also have plenty of families who have sworn up and down that we would never find it in their loved one and [the loved one] had it."

In terms of the research itself, everyone is essentially on the same page.

"When the doctors are simply being medical professionals and talking about the research, I don't think there's anything we disagree on. It does come down to how you talk about it," said Nowinski, who is not a doctor.

He and Cantu co-founded the Sports Legacy Institute to attack this issue, and he is pursuing a doctorate in behavioral neuroscience. Part of his job is to secure specimens and funding. Part of it is to speak out.

"Again, I will admit I've been pushing," Nowinski said. "I have my role, and that can affect how the group is perceived. I think we all have the same goals in mind."

The disagreements start with the definition of CTE itself. Kutcher said it could be defined as "any situation where you suspect trauma was the cause of finding abnormal tau in the brain" – as long as "you then are careful to describe the fact that you can have abnormal tau in the brain and not have a neurological problem." But Kutcher said that is hard to squeeze into sound bytes, and that is why he prefers a different approach.

"Let's define CTE as the neurological disease," Kutcher said. "The term encephalopathy, that's a Latin term for 'sick brain.' In the neurological sense, it classically refers to disruption of function. … You can find tau in the brain where you wouldn't expect it to be there, but if people live with it their whole lives and it never causes a problem, what does it mean?"

Nowinski said it means it could cause a problem.

"To me, it's a bizarre argument because we all agree – and everyone in that room agreed – that it's a progressive disease," Nowinski said. "You cannot control the rate of progression. We do not know the rate of progression. The final stage of the disease – Stage 4 – includes dementia. I can guarantee you based on symptoms and case reports you do not want Stage 3 or 4. Therefore you would probably not want Stage 2 as well, because at some point there's a good chance it turns to Stage 3."

The disagreements extend to the cost-benefit of BU's public-relations campaign. There is the research itself. Then there is the presentation of the research (news releases). Then there is the presentation of the presentation (news reports). Then there is how the information is absorbed by the public. It's a game of telephone that amplifies the certain nuggets and muffles the nuance.

Kutcher sees high school, college and pro athletes. In the past, they came to his office worried mainly about one thing: when they could return from a concussion to play again. Now some athletes – or their parents – come to his office worried about the long-term implications. Some opt not to play; some parents don't let their kids play.

"At first glance, you can say, 'OK, fine. They don't play. It's just sports,' " Kutcher said. "But really, when you stop and talk to people and understand what is important in their lives, it's a huge deal. It's a quality-of-life issue. … I think it's a matter of helping them make good decisions based on proper information."

Kutcher said a rare event bothers him even more: people who are depressed for whatever reason and have lost hope because they have had concussions, they have heard about CTE and they assume they are headed down an irreversible path toward dementia. That could lead them down another path.

"[They] are concerned that they are going to end up like these guys on TV," Kutcher said. "These are athletes who already have some signs of depression, who are now worried that they are going to kill themselves. What people see and hear in the media has a real effect."

Echemendia said a 13-year-old boy sat in his office shedding tears. He asked what was wrong. The kid said: "I don’t want to be depressed and commit suicide."

"I do think that the sensationalists' views and the hyperbole that's been out there really does cause some problems in the sense that it takes the injury out of context and it makes sweeping statements that are not supported by the science at this point in time," Echemendia said. "I think that there is a difference between awareness and hyperbole."

Kutcher said millions of kids are on one side of the equation and a very small percentage is on the other. "They're making observations, and they're making assumptions, and they're basically describing worst-case scenarios," Kutcher said.

Nowinski said they were compelled to do so. While the risk is unknown or undefined, it is real.

"We have to let people know there is a worst-case scenario out there in more people than we'd like," Nowinski said. "Everyone who is doing this in sports is getting into this voluntarily, and they need to know there is a risk as they make those decisions because they can change their behavior to lessen that risk."

Nowinski said medical literature says the risk of suicide triples after a concussion, so parents need to be aware of that and monitor their children while they are vulnerable. He also said it was "a little ridiculous" to blame BU for giving some people the wrong impression.

"Whether or not we're saying everything absolutely perfectly or the media is reporting everything perfect or not, there will be people who overreact one way or the other, and it's natural," Nowinski said. "There was nobody who came into [Kutcher's] office five years ago who was worried about long-term problems, and now some people are, and that's good. Their level should be appropriate. But the reality is, we don't know what's an appropriate level. It's not really a disagreement. It's what you do in your day-to-day."

So what do we do in our day-to-day business? How do we bridge the gap here, and how do we handle these issues in the meantime?

A significant amount of study is needed to scientifically establish the causes and effects of CTE. One big question: How do you separate CTE from other diseases like Alzheimer's and the natural aging of the brain?

"Almost every player has had a concussion sometime in their hockey career," Aubry said last November. "Now, does that mean all of those guys will develop those problems later on in life? No. Because I think we would be seeing the results of some of that now in some of our older hockey players. You have so many other confounding factors – whether it’s depression, alcohol, the type of life that they live and certainly just the normal general aging of the brain – that make things a little more complicated."

Said Kutcher: "If you look at all the people who have cognitive problems late in life and have dementia, have Alzheimer's, there's not an epidemic of ex-athletes in that population. There's a suggestion here and there that some populations of athletes have a higher risk of things like Alzheimer's, but it's not obvious and it's not a dramatic thing. So somewhere in there lies the truth, and to get to that truth, you need to do research – hard, complicated, long research."

[Related: Experts break down chronic traumatic encephalopathy (CTE) debate]

An autopsy series like the one at BU would not accomplish that.

"Well, of course," Nowinski said.

Kutcher said there is research ongoing at several centers to link head trauma to tau deposition using animal models, but there are no results yet.

The next step would be to follow people over time. Enroll athletes in a study. Measure their cognitive ability. Measure their head trauma. Check on them at regular intervals until they die. Kutcher said the University of Michigan has put together a consortium with other schools that would cover the spectrum of contact in sports – from swimming, golf and track; to baseball and softball; to basketball and soccer; to wrestling, men's lacrosse, hockey and football.

BU is working on ways to diagnose CTE in living people. The goal is for doctors to be able to spot it and treat it someday.

"Please, get the message out," Nowinski said. "There will be something to help people. That's the one thing that doesn't get emphasized, which is why there would be a fair concern about giving people the wrong message that there's no hope. There's hope. There's a lot of hope."

Nowinski said no one is telling athletes not to play hockey because "the ice is too hard." Athletes are going to play, anyway.

"Let's continue the research so that athletes know the risks they're taking when they step onto an ice surface," said Burke, who had surgeries on both shoulders and his right knee while suffering his concussions. "But like I said, this can't be news. I can't imagine there's a hockey player on the planet that doesn’t realize there's risk associated with a full-contact sport. Every stitch they took out of my face, every surgery I've had, is linked to contact sports, and again, I chose them and I would not change any of those choices, what they have added to my life, how they've shaped my life. I wouldn't change a thing."

Some things do need to change and have changed already. We have to keep improving the diagnosis and treatment of concussions. We have to keep reducing the amount of head trauma in athletics, both the big hits and the milder impacts that could have a cumulative effect. No matter where you stand on the science, it's better to be safe today than sorry tomorrow.

Shanahan asked McKee about himself. He had a few concussions over the course of his career, but never one on top of another. McKee assured him that based on her experience CTE develops most often in people who have repeated head trauma. CTE is thought to be more of an issue in football – particularly for linemen – than in hockey because of the way the sports are both played and practiced.

Cantu, McKee, Stern and Nowinski all serve on the NFL Players Association Mackey/White Traumatic Brain Injury Committee, and Cantu serves as a senior advisor to the NFL Head, Neck and Spine Committee. The NFL has donated money to BU. Unlike hockey, football has bought in literally and figuratively.

"It's less of an urgency in hockey for them to truly buy it," Nowinski said. "They're doing a good job in trying to prevent it, whether or not they fully believe."

Cautioning that the season is young, Shanahan said he can see the effect of the new rules, disciplinary system and return-to-play protocol. He still sees bodychecking in similar numbers but believes concussions are down significantly.

"I do believe the credit goes to the players," Shanahan said. "I don't know if there's too many players in the NHL that understand CTE, but I think that players just in general have learned and understand the importance of taking care of their brain and the difference of playing through an injury and playing through a concussion. The players aren't always happy when they get a phone call from me, but overall they want dirty, illegal head shots out of the game."

The efforts at the rink and in the lab are moving toward the same place, even if they aren't in concert. In the CBC piece, Nowinski chided Shanahan, saying they exchanged 30 emails trying to schedule a meeting over the summer.

"And he never came," Nowinski told CBC. "And I don't want this to poison our relationship in the future, but if I'm him, he's got to see these things for himself."

Shanahan said they exchanged three emails, not 30, but their schedules never aligned. He said he told Nowinski he would follow up, and he did last week with his son heading to Massachusetts for that hockey tournament. He is not a CTE expert. But he is a hockey expert, and he said he has an open mind.

"When somebody tells me they've got something I think I should hear, I try to hear it," Shanahan said. "I think to learn more and to study the brain more is not a bad thing."

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